Disability and Health Care Rationing

First published Fri Jan 29, 2016

In the 1990s philosophers, in particular bioethicists, debated the
broad question of the justice of health care resource allocation, and
in particular the ethical pros and cons of the dominant rationing
strategy based on cost effectiveness analysis (CEA) with benefit
characterized in terms of “quality of life”. A dominant
theme in this literature was whether a pre-existing health state, or
resulting health outcome, should be taken into account when allocating
health resources. More specifically, the debate centered on whether a
person’s disability should be taken into account, or whether
doing so would be discriminatory or unfair. As Dan Brock explained it,
this concern was raised because of the confluence of two
events—the then recent (1990) passage of the Americans with
Disabilities Act (ADA), prohibiting discrimination on the basis
of disability, and the 1992 Oregon Medicaid proposal for rationing
services, which used both CEA and a quality of life outcome measure to
prioritize treatments for persons with specific health conditions and
which arguably systematically disadvantaged people with pre-existing
disabilities (Brock 1995, 1999, 2004).

The ethics of health care allocation or rationing raises a raft of
issues that are not directly dependent on the potential discriminatory
impact on persons with disabilities. Yet, since it is difficult to
clearly separate the general ethical issues from those raised by the
focus on disability, we begin in Section 1 by surveying, first,
general ethical concerns in health care rationing, and then the
specific issues raised by CEA and quality of life as a metric of the
“benefit” that health care resources provide. We then turn
in Section 2 to review why it has been argued that disability poses a
special set of ethical issues in health care rationing. The ethical
issues of health resource rationing (or “prioritization”
as it is sometimes called) can be exemplified either at the individual
level of specific allocation decisions “at the bedside”,
or more generally as a social policy of health care rationing. The
ethical issues at the individual level are reviewed in Section 2, and
social policy issues are considered in Section 3, including whether it
makes any difference if access to health care is viewed as a human
right. We conclude in Section 4 with the unsatisfactory result that we
remain in a dilemma: refusing to consider disability in health care
allocation seems irrational and unfair, but taking disability into
account raises a range of, apparently, irresolvable philosophical
issues.

1. The Ethics of Health Care Rationing

1.1 Rationing health resources

What are the principal ethical concerns involved in how we allocate
scarce medical resources to people who can benefit from them? Health
care resources (broadly construed to include treatments or
interventions, medications, medical and rehabilitative devices, health
care services and service providers, health care systems, clinics and
other settings, and so on) are by their nature scarce resources. They
are scarce both as a consequence of societal, macro-allocative
decisions about how much social resources are put into health care
(rather than, say, into education, scientific research or fighting
foreign wars), and because some of these resources, such as
transplantable organs, are intrinsically scarce.

Scarcity entails that health resource demands will always overwhelm
supply, which in turn entails that some method of constrained
allocation must take place. Rationing is the generic name for this and
it comes in many forms: implicit or explicit, case-by-case or
systematic, rational and fair or the opposite, overt, transparent and
professionally-sanctioned, or hidden, unexamined and rationalized as
something other than rationing. The key point is that rationing is
unavoidable and always occurs. As health economists insist, since
rationing of health care resources is inevitable, best it be open,
transparently justified and understandable, based on good evidence and
argument (Ubel 2000). The ethicist agrees, but adds the consideration
of fairness.

A persuasive criterion of rationality in rationing is efficiency:
since supply is not infinite we must ensure that every allocated
resource is used to achieve the maximum benefit it can provide. While
in some domains the nature of a “benefit” is
controversial, here it is obvious: health resources produce health
benefits, either incremental improvements in health or the prevention
of worsening health and premature death. Understanding death (or
premature death) as the worst health outcome, life-saving or
life-prolonging is (usually) a clear health benefit. But so is
improving bodily functioning, mitigating or ameliorating functional
problems or preventing functional decline. Although death is not
preventable, disease, injuries, and other challenges to an
individual’s health can either be prevented or their impact
lessened, either indefinitely or for some period of time. Health
outcomes, in short, are either quantitative (number of years lost to a
health challenge) or qualitative (extent of functioning lost).

If we define a “health need” as any decrement in health
(either years to live or a less-than-optimal level of bodily
functioning), health resource efficiency is a matter of using health
resources to minimize ill-health in a manner that does not waste
health care resources. In the case of a single individual, there is no
issue: give the person the resources he or she actually requires and
nothing more. But resource allocation is only an issue when there is
more than one claimant to the same, scarce, resource. Resource
allocation is a problem of fairness across populations. This leads us
to the question of distributional fairness where, as we shall see
below, there are various competing options besides CEA. At first
glance, however, the general efficiency requirement that scarce health
resources be used to maximize benefit or minimize need seems strongly
intuitive.

The intuitive plausibility of the efficiency requirement is the
motivation for the rationing strategy based on cost-effectiveness
analysis (CEA). The health resource is a cost, the health improvement
a benefit, and intuitively we should try to get as much benefit from
the cost as possible. Alternatively put, CEA mandates that the lower
the cost per unit of health improvement the more effective the use of
the associated health resource. Although this strategy can in
principle be applied to health resource usage at the individual level,
CEA, reflecting its intellectual heritage as a form of utilitarianism,
is standardly viewed as a societal strategy in which costs and
benefits are aggregated over the population.

In practice, though, cost-effectiveness analysis in health care
allocation faces a substantial methodological hurdle: there is a vast
array of incommensurable health improvements—lowering pain
levels in arthritis, improving muscle strength or respiration
efficiency, controlling high blood pressure, adding a year to life,
postponing the onset of dementia. Since CEA requires health
improvements to be comparable between individuals and across the
population, an underlying health improvement metric—what
statisticians call a “latent trait”—needs to be
identified that is (at least) ordinal and comparable, if not precisely
measurable. We need to identify, in short, what every health
improvement shares in common. That is the measure of a health
improvement, and the benefit that factors into the CEA
calculation.

The most commonly used metric is called “quality of
life”—every health improvement, whatever else it
accomplishes, incrementally improves the individual’s quality of
life. Given that a health improvement is potentially either
quantitative or qualitative (extending life or improving life), it is
necessary to bring these two facets into a single measure (called,
generically, a summary health measure). A common way of doing this is
in terms of the econometric concept of quality-adjusted life year or
QALY. Every health improvement produces a health state with an
expected longevity (the number of years left to live) and level of
functioning (the quality of living in that health state). These can be
metrically joined into a single score by using the common metric of
years lives and discounting the value of a year lived in a particular
health state by the quality of life value of living in that state. If
full health is represented by the value of 1, death by 0, then the
quality of life values of all possible states of health a human can
experience can be assigned a number between 1 and 0, and that number
determines the quality of life impact of the health state on a person,
in terms of some proportion of a full life year. The values for each
state can be generated by a population ranking exercise (as was done
in the Oregon example), by expert consensus, or by means of a variety
of econometric “preference elicitation techniques” such as
“standard gamble”, “willingness to pay” or
“person trade off” (see Nord 1999 for the details of these
techniques in the health domain).

Although the most commonly used in health resource prioritization, the
QALY is not the only health benefit summary measure. The
disability-adjusted life year or DALY operates similarly to the QALY,
although conversely in terms of the burden of living with a
disability, measured in life-years (see Murray 1996). Here 0 is again
death and 1 full health and a DALY score measures a health state as a
function of life-years lost to disability. To compare the two
measures, if the quality-adjusted factor associated with a health
state like spinal cord injury (SCI) is 0.4, then the quality of each
year of life post-injury is 0.4 of a year lived in full health. If one
is expected to live another 30 years, then the overall QALY is 12
years. DALYs work the same way, only in reverse: the person with the
SCI would have the overall life burden of 0.6 times 30 years or 18
disability-adjusted life years. (There are other differences between
the two measures that are more technical in nature and can be ignored
in this discussion.)

While QALYs are most commonly used as measure of the benefit from
health resources for CEA in health allocation strategies (e.g.,
UK’s National Institute for Health and Care Excellence (NICE)
uses QALYs for quality of care determinations), DALYs have been
extensively used by the World Health Organization and the World
Bank—and the Institute of Health Metrics and Evaluation in
Seattle, Washington—to determine the population burden of
disease and injuries, primarily for public health applications,
including especially national priority setting (Jamison et al. 2006,
updated in Das & Samarasekera 2012).

The natural home of the CEA approach to allocation is at the
institutional or meso-allocative level where decisions are made far
from the individual bedside and are hidden from view in the form of
hospital reimbursement policies and clinical guidelines. At the
highest policy level of macro-allocation where overall national health
budgets are developed, only the most technocratic of societies would
have an explicit prioritization strategy based on CEA. In most
democratic societies, health care budgets are determined by a complex
interplay of politics and bureaucratic pressures. These forces tend to
allocate more resources to urban areas, focus on curative rather than
preventive services, and cater to special constituencies or those with
the more highly paid lobbyists: all of which is demonstrably
inefficient. Worse yet, in many countries, health care resource
macro-allocation is governed by ability to pay, which is the most
straightforwardly inefficient (not to say inequitable) allocation
strategy there is.

At the level of meso-allocation—the distribution of health care
resources across a single institution, such as a hospital or
clinic—much of what is called “rationing at the
bedside” is disguised as standard clinical practice (Ubel 2000).
If a physician—whether motivated by pressures from hospital
administrators, managed care organization or insurance company, or
merely excising her or his professional expertise—decides to
forego live-saving treatment for a patient on the grounds that the
health benefits would not warrant the use of the resource, then the
judgment clearly reflects, rough and ready, intuitive application of
CEA. Or if a treatment is not provided because it is judged
“medically futile”, that judgment is in effect a
cost-benefit analysis. Treatments are said to be “futile”
when in the physician’s judgment the expected health benefits do
not sufficiently outweigh the costs of providing the care (Crossley
1995; Batavia 2002). Similarly, “Do Not Resuscitate” or
DNR orders, while they may be equally motivated by futility or even
compassion, are essentially CEA rationing techniques, although here
the judgment is that the resource would have no benefit at all.

1.2 Ethical concerns with CEA and QALYs as a prioritization strategy

At least as compared to pure politics or the “free
market”, using CEA with a metric such as QALY for rationing the
use of health resources has the strongest claim to rationality. But
what of its ethical acceptability? Even strong advocates of using CEA
to ration health resources acknowledge that it suffers from at least
five fundamental (and interconnected) ethical concerns. Some of these
concerns only make sense at the population level of meso-allocations,
but all affect, directly or indirectly, allocation decisions at the
individual level (Daniels 1993, 1994, 1998; Brock 1995, 1998; Brock
& Wikler 2006).

1.2.1 The aggregation problem

To calculate the effectiveness of care resource utilization at the
population level requires both resource costs and quality of life
benefits to be aggregated in terms of the expected number of uses of
each resource. A low-cost and low-benefit, but widely used resource
will tend to rank as more efficient than a high-cost and high-benefit,
but rarely used resource. This can lead to counter-intuitive results.
For example, when the Oregon government tried to put into place a plan
to lower Medicaid costs using CEA and QALY they began by identifying
treatment/condition pairs—that is, types of treatments provided
to patients with different kinds of health conditions—and from
these created a rationing priority list in terms of expected QALY
benefits from treatment. One of the consequences of the plan was that
the treatment of capping teeth was far higher on the priority list
than appendectomy, even though no one would die from uncapped teeth
while untreated appendicitis could be lethal. The reason was obvious:
you could pay for many hundred instances of teeth capping for the
price of a single appendectomy, and adding up all of the small but
non-zero QALY benefits from the capping would trump the QALY benefits
of the appendectomy. This result was widely viewed as profoundly
counterintuitive (although some argued that our intuitions are not
always as clearly opposed to favoring aggregated benefits [Kamm 1993;
Nord 1999]).

1.2.2 The priority problem

One of the apparent ethical advantages of CEA is its commitment to
equality and impartiality: everyone’s health needs are
considered equally, irrespective of race, gender, or income level. But
as the aggregation problem suggests, we intuitively believe that
saving a person’s life is ethically more important than
improving their appearance. More generally, it is an open ethical
question whether we should skew our distribution of health resources
towards those who are worst off or whose health needs are more
significant or urgent; and if we do so, it is not clear how much extra
weight these considerations should have in our assessment. An
additional open question, to which we will return below, is whether
the “worst off” should be defined in terms of health state
or some other disadvantage as well. One version of the underlying
intuition at work here is the often cited “rule of
rescue”: since saving a life is arguably of infinite or at least
indefinite benefit, we should always rank allocations that save a life
the highest. For example, if a community spends a substantial part of
its yearly health care budget on rescuing a small child who has fallen
down a well, this is ethically justifiable, according to the rule of
rescue, although patently inefficient (see the debates in Hadorn 1992;
Jonson 1986; Cookson & Dolan 1999: Nord 1999; and Ubel 2000).

The priority problem need not be characterized in terms of who is
worst off so much as who most deserves the resource. For example,
should it matter, all things being equal, whether a resource is
provided to an elderly person who will not benefit as much from the
resource as a younger person? In general, should the age of the
recipient matter? CEA tends to favor highly efficient resource users,
who will normally be younger, and some non-utilitarian philosophers
have argued that as long as we ensure everyone a normal
lifespan—or “fair innings” as Williams (1997) calls
it—then ranking older recipients lower is not unfair.
Alternatively, it has been strongly argued that, benefit
notwithstanding, people who live unhealthy lives and are responsible
for their health needs should be downgraded or lose their priority
(Moss & Siegler 1991; Wikler 2002; Cappelen & Norheim 2006).
(Although the examples used for this argument tend to be drug addicts,
smokers, drinkers, and other discreditable risk takers, the argument,
if successful, would also apply to athletes and heroes who risk their
lives.)

1.2.3 The democracy problem

The Oregon prioritization scheme based its QALY evaluations on a
general resident’s survey in order, it was claimed, to capture
“community values”. But why should these values determine
which treatments are funded, since (as was demonstrable in the actual
rankings that resulted) these values may reflect cultural or racial
biases or just profound misunderstandings about health problems and
what it is like to live with a disability (Asch 2001; Doyal 1998)? On
the other hand, it is the public who pays for these health resources
so why should some group of elites, however knowledgeable, pre-empt
majoritarian decisions (Brock 2002)?

1.2.4 The indirect benefits problem

Since CEA weighs benefits against costs, it is natural to ask whether
benefits should be restricted to health benefits alone, or should
include other, more indirect benefits such as the economic benefit to
the individual from returning to work or the financial benefits to
employers from reducing lost work time due to employee illness (Brock
2003). Economists would favor the broader conception of benefit since
it provides a better calculation of the societal value of a health
care prioritization scheme. More finely-gained benefit assessment
would also allow us to make more ethically sensitive judgments about
where money should be spent: e.g., it would be ethically justifiable
to favor the health of mothers of children who need their care. On the
other side, not only is it extremely difficult to quantify these
benefits, it has also been argued that it is unfair to prioritize
health care resources to favor patients whose improved health has
greater indirect benefits to themselves or society since that is to
treat people and their health as means to social ends. Economic or
other benefits and health improvements are in “separate
spheres” and merging them will make our health prioritization
strategy both ethically compromised, and practically unworkable (Brock
2003).

1.2.5 The fair chances vs. best outcomes problem

The final concern is actually at the heart of all of the above
concerns since it points to the underlying ethical tension between
aggregate goodness and fairness—between the utilitarian approach
of CEA and the deontological or egalitarian concern for fairness. The
aptly named “fair chances” approach is grounded on our
basic intuition that people deserve equal concern and respect, and so
an equal chance at benefiting from an allocation scheme. If two people
need a heart transplant to live, and one will live twenty more years
with the new heart but the other only two years, is it really fair to
use CEA and give the heart to the first? Is that truly giving both
people an equal or fair chance to the health resource? Or again, if
two people need a surgery to repair a torn cartilage in their knees,
and one of these also has serious asthma, is it fair to prioritize the
surgery to the first because the overall QALYs benefit of the person
with asthma is lower?

On the other side, the egalitarian “fair chances” approach
can hardly be the whole story since the only allocation strategy that
fits a purely egalitarian approach is random allocation or a lottery.
A lottery is vaguely fair when the two potential beneficiaries incur
the same costs and benefits, but not when the benefits accrued from a
resource are hugely different, or when other considerations, such as
urgency, enter into the calculation. Some egalitarians have
backtracked from pure randomness of a lottery (so that the asthmatic
in the above example would have a somewhat lower chance of being
successful—see Brock 1988; Broome 1988, 2004). Others have
argued that considerations like urgency, the level of overall health
need, or age should affect the proportional chances of success (Kamm
1993). Yet others have insisted that the asthmatic has already lost
the “natural lottery” by having a serious health
condition, so there is no need to run another lottery (Menzel 1989).
These attempts aside, the lottery approach is not greatly favored,
except as a last resort.

1.3 Current state of debate on health resource prioritization

The philosophical debate on health resource prioritization has been
somewhat muted in recent years. A fragile truce has been reached in
which it is admitted that we cannot accept either a purely utilitarian
CEA approach unalloyed with considerations of fairness, or a purely
egalitarian lottery approach unaffected by intuitions concerning the
significance of ineffective use of valuable resources. In part this is
because of an intractable dilemma that dominates the rationing debate,
which we will describe more specifically for the case of disability in
the next section. We seem to be stuck between two extremes: allocate
in terms of a “neutral” consideration such as “first
come first serve” or pure lottery, or open the door to an
unlimited number of potentially ethically relevant considerations
that, together, make the allocation decision overwhelming difficult
and cumbersome. The first option seems irrational, the second
impractical.

Another reason for the stalemate is the aggregation problem as applied
to the “benefit” side of the CEA calculation. Some have
argued that we should abandon the QALY and DALY, summary health
measure technology entirely (Anand & Wailoo 2000), while most
agree with Dan Brock that health care prioritization without any
reference to quality of life is a non-starter (Brock 1995). There have
been some attempts at finding a workable multi-criteria approach in
which health benefits are disaggregated into separate components
(Baltussen & Niessen 2006), but such suggestions open the door to
the so-called “indexing problem” (discussed later in the
context of disability) of trying to sum up disparate and
incommensurable benefits (income, happiness, social productivity,
creativity) in a way that would allow us to compare two health
outcomes. Attempts at direct head-to-head comparisons between health
outcomes require the dubious methodological assumption that health is
unidimensional: walking out of the hospital with one
surviving hand is obviously better than with none; but is being left
partially sighted better, or worse, than ending up in a wheelchair?
How do we compare various domains of human functioning that, together,
make up the state of health?

This then is the general ethical backdrop against which the special
moral concern about the impact of disability on health resource
prioritization must be placed. We begin with why it is that
disability—of the myriad of differences between people that
might matter in how we decide to allocate health care
resources—is different.

2. Why does disability pose a problem for health care rationing?

2.1 The difference disability makes

The situation of persons with disabilities is a special ethical
concern for health care allocation because disability is not just any
human difference—like age, gender or ethnicity—or any
social disadvantage—like poverty, gender discrimination, or
minority marginalization. Disability is both a difference and a
disadvantage that is conceptually linked to a person’s
health state, and therefore health needs. All disability theorists
these days agree that the physical, social and attitudinal environment
in which a person with a health problem or functional impairment lives
will make a huge difference to their perceived
“disability” the person will experience (WHO
2001). Although there are a few hold-outs of the so-called
“social model” that insist that disability is a pure
“social construction” that has nothing to do with the
state of a person’s health (see Oliver 1990), the Consensus is
that disability is conceptually linked to health: without an
underlying health problem or impairment there is no disability.

While the actual health needs of persons with disabilities, even
severe disabilities, varies enormously, the conceptual link to health
and human functioning means that health is not merely contingently
related to disability, as gender, poverty or even quality of life are.
Moreover, disability is not merely conceptually linked to health, it
is linked to some problem with or decrement in health. This explains
why the case of disability raises the priority problem in clear
relief: every person with a disability is potentially a less-efficient
health care resource user since they have an ex ante
(pre-allocation) health problem.

It is important to note, however, that disability is not conceptually
linked to (lower) quality of life. Unfortunately, there is good
evidence that it is commonly believed that people with disabilities
suffer from a lower quality of life associated with their level of
functioning or premature mortality, and that ex ante
decrement in quality of life may not be fundamentally altered by the
health resource (Albrecht & Devlieger 1999). This empirical fact
is the source of the democracy problem as it applies to disability
since if the general public is laboring under a general prejudice
about what it means to live with a disability, then they will be more
easily persuaded that disability is an additional cost, or limits the
benefit received (or both).

To be sure, there can be no doubt that disability incurs additional
personal and social costs in the form of impairment-related resources
such as assistive technology (wheelchairs, hearing aids, and augmented
communication devices); changes to make their world more accessible
(curb cuts, audible stop lights, elevators, accessible toilets and
disability parking); and social services such as income maintenance,
disability pensions and vocational rehabilitation. By the same token
the health care needs of persons with disabilities may be more costly
to provide, given potential complications and co-morbidities as well
as the accommodations that may be required to ensure access to health
care (for example, that examination tables can accommodate persons
with complete lower body paralysis). Because of this, however, people
with disabilities will always have to face the converse of the
indirect benefits problem: as a population, they incur health and
non-health costs that, if factored into the cost of the health
improvement associated with a health resource, would tilt the CEA
efficiency calculation against them.

2.2 Disability and individual, head-to-head allocation

Taking all this together the result is, from the perspective of CEA
reasoning, that disability seems to be a salient consideration for
resource allocation. For the rest of this section, we will review what
has been said about how disability impacts the ethics of health care
allocation, and in particular how the five problems mentioned above
play out in the case of disability.

There are two perspectives in which these intuitions can be tested: at
the level of individual, head-to-head allocation contests and at the
level of social policies or strategies about health care allocation
across the population. In the first case we presume a head-to-head
comparison between a person with and another without a disability,
both of whom require the medical treatment or resource that, for
whatever reason, can only be available to one of them. We will have
occasion below to question the philosophical value of head-to-head
allocation scenarios, but there is no doubt they have emotional power
and put the impact of disability into stark relief. Interestingly,
although the impact of disability on rationing was initially raised
legally in terms of rationing policy (the Oregon rationing experiment
mentioned above), despite creative legal academic discussions (Garvey
1992; Peters 1995; Orentlicher 1996; and Crossley 2000), United States
courts were reluctant to move from the individual case to the policy
level in the rationing debate because they were impressed by the
argument that prioritization of health resources was simply
unavoidable and so not discriminatory as a general policy. We return
to this point below in the context of human rights and the impact of
disability.

2.3 Problematic scenarios at the individual level

In this section we explore the ethical issues involved in health
resource rationing involving disability at the individual level
(leaving the ethics of rationing policy for the next section). For
concreteness, we look at allocation scenarios commonly used in the
literature to highlight the impact of disability on the allocation
strategy of CEA using the QALY metric to define health resource use
benefit, or to test other intuitions about non-utilitarian,
egalitarian principles of fair distribution. There are many, many
different variations on these examples that can be imagined to test
our intuitions, but these will give a flavor of this form of
philosophical analysis. The cases are divided naturally into those in
which life itself is at stake and those in which some non-fatal health
outcome involving an improvement in functioning (stabilization of
functioning, or prevention of further functional decline) is at
stake.

Note: For all the examples below, let A represent a person with
a disability and B and C persons without. We make no
assumption about what kind or severity of disability is involved,
except to remind ourselves that the underlying impairments may be
trivial (a congenital port wine stain on one’s face), although
socially stigmatizing, or moderate (arthritic pain affecting
mobility), or extremely severe (life-threatening blood pressure or
compromised lung function). We assume that A, B, and
Cex post (before the resource is administered) all
have roughly the same health needs with respect to the proposed
treatment or resource use, although A may have other health
needs associated with her pre-existing disability.

Life-saving cases:

A has a shorter life expectancy, post-treatment than
B, but the treatment will save the lives of both A and
B.

A and B have the same life expectancy
post-treatment, but B will have a higher quality of life.

A’s disability is such that the chances that the
life-saving treatment will be wholly effective, or its potential for
positive effect, are greatly diminished in comparison with
B.

Neither C nor B have pre-existing disabilities, but
post-treatment we have good reason to believe that C will
acquire a disability and B will not, and that disability will
either lessen C’s life expectancy, or quality of life, or
both.

In all of these scenarios, the CEA and QALY allocation strategy would
prima facie favor the non-disabled individual B. Both
the priority and the indirect benefits problems are at work here.
Although this result seems intuitively acceptable for case (iii),
since the treatment to A would be a total waste of a scarce
resource, and unfair if B could benefit from it. But it is far
less clear what we would say if the effectiveness of the treatment was
less obviously compromised by the disability. As for cases (i), (ii)
and (iv) the CEA analysis is at least troubling because the preference
is based exclusively on A’s (or for case iv),
C’s) disability, or ex ante quality of life. We
might not think it relevant what kind of life a person would live
after a medical treatment, and differences in life expectancy would
only be relevant if they were very stark—say A would only
live a few weeks, but B several decades.

Health improvement cases:

A’s disability acts like a co-morbidity and reduces
the efficacy of the proposed treatment so that the treatment has a
less quality of life-enhancing outcome for A than it does for
B.

A’s disability makes the treatment more complex,
extended and more costly than it is for B, even though the
resulting outcomes may be identical.

C and B have no pre-existing disabilities, but we
know that C will acquire one post-treatment and because of this
the quality of life-enhancing outcome will be less for C than
for B.

For cases (i) and (iii), primarily because of the use of QALY as a
metric for benefit, the standard strategy for health resource
allocation would favor B over A or C: because of
their disabilities, ex post or ex ante, individuals
A and C have worst health resource use outcomes than
B. As with the life-saving cases, our intuitions seem to depend
on how great the gap in quality of life is between A (or
C) and B. Should A and C experience an
extremely low quality of life after the treatment, while B
experience very high quality of life, then we are tempted to favor
B; but when the differences are minimal, then favoring B
over A seems arbitrary and unfair. The case of (ii) puts the
disadvantage on the cost rather than the benefit side, with the result
that CEA would favor B. Again, our intuitions here seem to be
affected by magnitude: if the cost difference is trivial, then it
seems unfair to favor B; if the differences are enormous, then
our utilitarian intuitions seem more dominant and we would favor
B. In general, once the subtleties of proportional benefit or
proportional cost are considered, our intuitions are actually very
fluid.

2.4 What do head-to-head examples really tell us?

Francis Kamm has relied almost exclusively on individual head-to-head
examples such as these to explore intuitions about the ethical
significance of disability in allocation decisions (Kamm 1993, 2004,
2009a and b). Although her examples are vivid and the discussions
often ethically illuminating, at the end of the day, one is left with
the sense that relying on our intuitions about these scenarios (and
their infinite variations) is a troublingly and indeterminate
exercise. The unrealistic simplicity of the cases might create
skepticism about how the debate has been framed. Surely, no health
care decision, at the individual level, would ever be this stark and
devoid of uncertainties. We are never completely sure whether our
treatments will improve functioning, even save lives, or whether
unintended side effects will end up making the outcome worse. In
addition, measuring benefit in terms of QALYs is not an exact science,
and the measurement of cost is extremely difficult, especially if, in
addition to the direct costs from the provision of the resource, we
add indirect costs and opportunity costs. Although the method of
testing our intuitions on artificial scenarios, making increasingly
nuanced changes in the case to highlight salient considerations, is
philosophical illuminating, it may arguably be somewhat
artificial.

Our intuitions seem both stable and reliable for ex ante
examples, where a decision is made to allocate the resource to the
non-disabled individual solely or automatically in terms of the
presence of a disability in the other candidate, without any
consideration of relative cost or benefit or the most rudimentary use
of CEA. Surely such a decision would be the very essence of
prejudicial and unfair. But even here our intuitions are not
completely secure since it may make a difference how the allocation
decision is framed.

Suppose we are asked to decide between a person in a wheelchair and
someone without a severe disability. If the issue is framed crudely in
term of “lives worth living” and we decide on
stereotypical and ungrounded assumptions about the abject misery of
living in a wheelchair, ex ante, then a case could be made
that our decision to favor the person without a disability was
irrational, unfair, and discriminatory. By contrast, suppose we cast
the situation as one in which unavoidable scarcity necessitates a
choice that, however it goes, will be regrettable and unfortunate
(sometimes called a “tragic choice”: see Calabresi &
Bobbitt 1978 and Nussbaum 2000). So framed, we might seem far more
ethically justified in appealing to disability, or indeed any other
real difference between the two individuals that is, at least in
principle, relevant to our judgment. Disability, as we have seen, is an
a priori relevant consideration to health care allocation.
We might argue that, after all, we have no option but to choose
someone (choosing no one would be both wasteful and unfair to both).
Against this it might be argued that fairness in such a circumstance
can only be achieved by a purely random choice.

3.1 The dilemma created by CEA

The individual allocation scenarios just described are powerful
“intuition pumps” (Dennett 2013) because they emphasize a
direct competition between two individuals over the same required
health resource. Yet if the only lesion we can draw from the
life-saving and health improvement scenarios is that our intuitions
about whether disability matters are clearer the starker the contrast
in benefit or cost, this does not seem to advance the debate very
much. Given that there is already a concern about the unrealistic
simplicity of the individual cases, perhaps we can get a better result
by asking whether, and in what way, disability is a relevant ethical
consideration as a general social policy or allocation strategy that
will be consistently and neutrally applied to everyone, without
exception.

If we are considering a social policy or population strategy for
allocation, we are seemingly bound by basic principles of procedural
fairness that pre-empt special-pleading and other exceptions. These
principles are also principles of rationality, and in the case of
allocation policy they obviously apply. But there are also special
presumptions about an allocation policy that also tap into our
intuitions about the rationality of a general policy, but concern the
specific nature of an allocation policy. There appear to be three
presumptions about such a policy that cannot be sensibly challenged:
A) the rationing or prioritizing policy is necessary because health
resources are scare; B) resource use effectiveness, if not the end of
the story, is at least part of it; and C) some ordinal measure of
health outcomes must be used to compare outcomes.

Effectiveness, as we saw, is both a matter of the costs of using a
health resource and the benefits accrued. At the policy level it is
far more important to be clear about what range of costs are relevant
(should we include indirect and lost opportunity cost?) as well as
what constitutes a relevant benefit (should we include enhanced
employment prospects, a more financially secure family situation, and
so on?). The cost side of the equation is rarely considered by
bioethicists, which is a clear gap in the debate. The benefit side has
been considered, as noted above, by Brock and others under the wider
rubric of the “separate spheres” problem (Brock 2003;
Broome 2004). We can ignore these complications in what follows and
restrict the issue of effectiveness, as is usually done in this
literature, to a single criterion: the capacity to benefit
directly from a health resource.

Whatever our intuitions may suggest at the individual level, when we
turn to a general allocation policy, it is clear that disability has a
potential impact both on cost and the capacity to directly benefit,
and a blanket refusal to take disability into account would be both
irrational and unfair. Importantly, ignoring disability is irrational
and unfair for everyone, including people with disabilities. If the
presence of a disability makes a medical treatment ineffective,
extremely impractical or vastly expensive, it would be foolish to
ignore this fact. It would be unfair to those without a disability who
need and could benefit from the treatment; but it would also be unfair
for a person with a disability to ignore the fact that some of his or
her needs would be unsatisfied, and some medical treatment of no use
to him or her (or potentially harmful). This means that disability is
not only ethically relevant at the policy level, but in fact it needs
to be factored into the selection of resource or treatment and of the
mode, method, and context by which the resource is delivered.

But if disability intrinsically affects costs of delivery and capacity
to benefit, allocation policy appears to be trapped in a dilemma: CEA
systematically disadvantages people with disabilities in health
resource prioritization, but it is both irrational and unfair (to
everyone, including people with disabilities) to ignore
disability-related differences in costs and capacity to benefit when
prioritizing health care resources.

3.2 Resolving the dilemma: first attempts

Some disability advocates argue that there is no real dilemma here
since “capacity to benefit” is merely a cloak for the
prejudice that the life of disabled person, like that of the elderly,
is of intrinsically less value and deserving of less effort to
preserve or improve (Asch 2001). These advocates have a point since
precisely this view can be seen in the pronouncements of respectable
bioethicists who do assert that the “disabled life” is
fundamentally inferior (Kuhse & Singer 1985; Singer 1983; McKie et
al. 1998). In the case of disability, for some writers, lower capacity
to benefit is not an empirical conclusion, but an a priori
assumption (Veach 1986; Harris 1986; Anand & Hanson 1997; Arneson
& Nord 1999; Rock 2000; Koch 2000). CEA systematically
disadvantages people with disabilities because it is intrinsically
discriminatory.

Although Asch and others are certainly not attacking a straw person
position, the response might be that there is an empirical basis for
the claim that disability adversely affects the capacity to benefit
from a health resource, namely the evidence that people with
disabilities tend to enjoy less quality of life improvement from these
resources than those without disabilities. The strength of this
rejoinder, however, depends very much on what is meant by
“quality of life”. If understood as a subjective
assessment or evaluation of one’s life—now more often
called “subjective well-being” (Kahneman, Diener &
Schwarz 1999)—then there is good empirical evidence that
disability does not negatively affect capacity to
benefit. People with disabilities tend to be happier, and assess their
lives to be of considerably higher value than would be objectively
assumed—a phenomenon called the “disability paradox”
(Albrecht & Devlieger 1999).

This may be granted, but it remains true that bioethicists who rely on
the notion of “quality of life” in this context tend to
assume, usually without argument, that quality of life is an objective
phenomenon that incorporates autonomy, accomplishments and a
reasonable array of opportunities to live a full life (see, e.g.,
Brock 1995, 2005). It is, of course, this objective sense that QALYs
was intended to quantify by means of evaluations of health states,
either by population or expert ranking, or by means of preference
elicitation techniques. Invariably these ranking exercises show that
quality of life decreases directly with the severity of the disabling
condition.

The disability advocate might respond that QALYs and similar measures
are simply not valid since the rankings are done by people who do not
themselves have first-hand experience with what it means to live with
a disability. Indeed there is some evidence that third-party
assessments of the objective quality of life of people with
impairments—either by health professionals or the general
public—are systematically lower than self-assessments by people
with impairments (Ubel et al. 2003), and that this bias may well be
the result of distortion from cultural and other prejudices (Amundson
2010).

Against this it might be argued that whether or not a person with a
disability is in an epistemically-privileged position concerning the
experience of disability, this privilege need not extend to an
objective assessment of the actual physical and other burdens of
living with the disability (Brock 1995). Quite the contrary, because
of the psychological dynamics of adaptation and adjustment, especially
after a traumatic injury, a person with a disability may well be in a
worse position to assess his or her life objectively. Once adjusted,
the disabled person may grossly overestimate the value of living with
the disability, which, while perhaps not a bad thing, in this context
has the effect of distorting the individual’s health and social
needs (Murray 1996; Menzel et al. 2002).

Even if this debate about how QALYs should be developed is resolved,
this may have little impact on the dilemma mentioned. If disability
objectively reduces quality of life, then the expected overall benefit
of a health resource will tend to be adversely affected and CEA will
disadvantage persons with disabilities; but on the other hand, if not,
and disability does not impact on the capacity to benefit from a
health resource, then people with disabilities will be disadvantaged
by the provision of these resources that do not take their
disabilities into account. As Amaryta Sen helpfully explains the
point, the value of any resource is not constant across a population
since some differences between people affect their ability to
“convert” the resource into what is value, either
objectively, or to them alone (Sen 1999; Ruger 2010). There are
differences between people that make a difference to the value
extracted from the same resource, and disability is perhaps the
clearest example of such a difference.

The QALY metric, however, is problematic for another reason. When
evaluators are asked to rank the impact of a disability on quality of
life they are asked to consider the overall “burden” of
living with that decrement in health or functioning. Undoubtedly, part
of that burden is the result of the social stigma, discrimination and
lack of opportunities that characterizes the disabled life, in all
cultures. People with disabilities typically have as a group the
lowest employment and education participation rates of any
sub-population (WHO 2011, Chapter 8), a fact that profoundly affects their quality of life,
but which has as much to do with failed policy to combat stigma and
lack of accommodation as it does with the underlying health condition.
Yet the fact that the burden of living with a disability is caused as
much by the social environment suggests that the QALY metric, even if
it accurately describes the burden of disability, is unfair as a basis
for resource allocation (Wasserman, Asch, Bickenbach 2008). In effect
we are saying to the person with a disability that because stigma and
failed policy make your life less valuable, we are not going to
improve your life by giving you access to needed resources.

One of the most robust defenses of how the CEA approach deals with
disability comes in the form of Michael Stein’s general defense
of utilitarianism against forms of resource egalitarianism (Stein
2006). Stein argues that only utilitarianism, by relying on the
greater benefit criterion of distributive justice, can handle our
intuitions about disability when it comes to health care allocation.
He acknowledges that disability is conceptually related to ill-health
or functional decrement (impairment), and, as a utilitarian takes that
to mean that disability also reduces welfare—and
proportionately: the more severe the disability, the greater the
welfare loss. Because of this relationship, he argues that the
utilitarian can precisely determine—in welfare terms—the
impact of a health benefit and this makes utilitarianism, overall, a
far better decision-making method for health care allocations.
Unfortunately, on his own utilitarian terms, Stein’s argument is
flawed. For, as we have said, as long as welfare is a subjective
notion, there is no reason to think that there is a strict correlation
between health and welfare deficit. Moreover, for a utilitarian
consequentialist, there is no a priori reason to think that a
person without a disability always experiences less welfare benefit
than a person with disability—since there are domains other than
health that impact welfare. On the other hand, if we are concerned
about maximizing welfare, rather than health, then we need to take
into account all consequential welfare advances that are linked to
health improvements (opportunity to develop talents, better job
prospects, or a more stable family life) and once that door is open,
there is no reason to think that disability will matter since these
benefits may, overall, greatly overwhelm the negative impact of
disability (Bickenbach 2008).

3.3 Resolving the dilemma: moving beyond CEA

The dilemma created by the cost-effectiveness strategy, or more
generally a utilitarian approach, may be argued to reflect the
perennial conflict in distributive justice between “fair
chances” and “best outcomes”. Although there are
diehard utilitarians like Stein, most philosophers are drawn to the
view that we must in light of these problems find compromise positions
in which cost efficiency is moderated by some countervailing principle
of fairness. Although the debate is about how to construct a social
policy of health care allocation—which potentially affects
everyone, so that everyone’s interests need to be taken into
account—this does not mean that the three presumptions mentioned
above are rejected. No participant in this debate would argue that
costs do not matter, that effective use of resources is irrelevant, or
that health care outcomes are wholly subjective and incommensurable.
Instead, we need to make allocation decision-making more complex by
taking account of egalitarian “side constraints” that
might modify our CEA results.

Thus some philosophers have argued that the debate needs to be infused
with the basic egalitarian principle of equal concern and respect, a
principle that may from time to time trump CEA considerations.
Sometimes, that is, “best outcomes” needs to be moderated
by “fair chances”. Dan Brock, who was the first to raise
the question of how disability impacts on health care allocation,
argued that the best way forward is to structure health resource
allocation to secure, to the greatest extent, equality of opportunity
for all (Brock 1995). Relocating the center of gravity of health care
allocation to equality of opportunity was extremely appealing since it
accorded with the a prominent view about the nature of health, and the
value of health care, most clearly articulated by Norman Daniels
(1985, and further developed in Daniels 2008). Health, Daniels argued,
has a special moral significance for us because it facilitates and
enhances our full range of opportunities in life, so ensuring that equality
of health care is one of society’s most effective means of
ensuring equality of opportunity across the board.

Yet it was not clear how a renewed emphasis on “fair
chances” helps to resolve the dilemma that CEA purportedly
creates. Even if a purely “best outcome” approach
disadvantages people with disabilities, focusing on “fair
outcomes” would not mean that we ignored differences in costs
and capacity to benefit created by disability. One might argue that,
as abstracted individuals, everyone should have an equal opportunity
to benefit from health care resources, ceteris paribus. Yet,
as it is irrational to ignore issues of cost and benefit, it is clear
that disability is just the paradigm example of a consideration that
disrupts the ceteris paribus assumption. People with
disabilities cannot fairly be denied the opportunity to benefit from
health care, but on rational and relevant grounds of cost and prospect
of benefit, they can fairly be denied health care, at least on a case
by case basis. Brock came to realize that the move to egalitarian
equality of opportunity could not resolve the dilemma posed by the
relevance of disability in health care rationing. After nearly three
decades of work he acknowledged that the problem of seemingly
justifiable disability discrimination “represents a deep and
unresolved problem for resource prioritization” (Brock 2002) and
“there is much work still to be done” (Brock 2009).

For his part, Daniels has argued that when it comes to health resource
decisions our fundamental intuitions are permanently at odds and
egalitarian theory cannot help. Our only solution is to ensure that
our health resource allocation policy is formalized so that all
decisions are firmly grounded on fair deliberative processes, in which
every voice and argument is heard and decisions are made by a fair and
neutral arbiter (Daniels, et al. 2000; Daniels 2008).

Searching for an egalitarian allocation principle that might avoid the
dilemma, some philosophers have gone back to the priority problem
mentioned above and noted that, depending on the severity of the
disability, a person with disabilities may have a greater need for
health resources than a non-disabled individual, or that the health
resource may have a more profound impact on securing equality of
opportunity for the disabled person. Making the case for allocation in
terms of who is “worst off” reflects the version of
egalitarianism called prioritarianism (see Parfit 1997; Arneson 2000)
in which the distribution of a resource is guided by the intuition
that the worst off have more to gain and should be given priority,
not, like in the utilitarian approach in terms of great welfare
benefit, but because of greater need.

The prioritarian, however, has two impressive hurdles to overcome: how
to determine, in health terms, who is “worse off”, and
secondly a version of the indirect benefits problem: why should we
restrict our focus on health when health resources have knock-on
benefits that go far beyond the sphere of health, including becoming a
productive member of society. Both issues turn in part on whether
health is an intrinsic or an instrumental good (or both). If purely
instrumental, then the value of a health improvement—and so an
estimate of how worse off a person would be without that
improvement—can only be determined by looking at the resulting
consequences for the individual and society. Moving in this direction
a wide range of considerations—social position, income level,
innate talents and good luck—would be determinative, even though
they have very little to do with the health benefit itself. If health
is only intrinsically valuable, then we would need a direct,
unidimensional and comparative metric of health-related disadvantage.
This is a formidable challenge since, once again, it would require
answers to imponderable questions such as “Is a person who is
blind ‘worse off” than a person who is deaf?’

Recently, Greg Bognar, recalling a version of “luck
egalitarianism” (see Arneson 2000) has suggested another tactic
that might avoid this tangle (Bognar 2010, 2011). Trading on the
distinction between the value of a life and its moral worth, he has
argued that we are uncomfortable with the quality of life measure, not
because it is irrelevant to the capacity to benefit from a health
resource, but because it tells us nothing about whether the individual
deserves or merits the scarce resource. He suggests that in general we
should ignore disability in the allocation of health resources.
Disability is only relevant, he claims, when it diminishes the
capacity to benefit from the health resource and the individual is
responsible for the disability. Thus, while it would be unjust to deny
a person a hip and knee replacement just because he or she is blind
because of bad luck, it would not seem to be unjust if the person was
voluntarily obese: being overweight contributed to the need for the
replacement surgery in the first place, and would in any event reduce
the benefit that the person would receive from the surgery.

Although an intriguing theoretical take on the problem, Bognar’s
solution, like all forms of luck egalitarianism, is fraught with a
very practical problem of distinguishing causal responsibility from
moral responsibility. We may feel confident blaming the excessive
drinker for the medical need of a liver transplant, but only if we are
equally confident that drinking was a choice, rather than a
genetically predisposed behavior. And how far back in the causal
history do we need to go to determine innocence or guilt? Most
traumatic spinal cord injuries are the result of risky behaviors, and
the soldier who voluntarily enlists surely understands the risks. Even
assuming that these investigations into blameworthiness could
conceivably be resolved, and resolved in a timely and inexpensive
manner, Bognar is not offering a feasible solution to healthcare
allocation in practice since ignoring blameworthy disability when
allocating resources is not only unfair, but impractical since
disabilities need to be taken into account in order to ensure that
treatments and other medical interventions are as appropriate and
beneficial for people with disabilities as for those without.

3.4 Health resource prioritization and the human right to health care

Is the ethical character of health care rationing fundamentally
altered if we posit a human right to health care for persons with
disabilities, as has been recently done by the United Nations
Convention on the Rights of Persons with Disabilities (UN
2007: Articles 25 and 26)? Does human rights discourse strengthen the
argument that health resource rationing cannot disadvantage persons
with disabilities? Does it put more pressure on the need to ethically
justify the application of cost effectiveness to allocation decision
making? Does it help us resolve the dilemma that disability poses for
health care allocation?

The Convention explicitly asserts that all of its specific
substantive rights—to health care, education, employment and so
on—are rooted in the protection of equality (or prohibition of
discrimination) and human dignity. This would suggest that if health
resource allocation was prejudicial or discriminatory against people
with disabilities, it would be a clear human rights violation. This
assessment would hold whether the people with disabilities were
disadvantaged directly and individually from “bedside
allocation” or indirectly because of the application of
otherwise disability-neutral private or public health care funding
arrangements, or health care allocation policies or strategies.

Unfortunately, the language of human rights adds little to the
disability advocate’s already strong argument against ex
ante prejudice or stigma in rationing decision-making, an
argument that has no impact on the larger problem posed by the dilemma
of whether disability should matter, and if so, how it should matter.
In the case of the UN Convention, the human rights posited
are not special rights restricted to persons with disabilities, rights
that would, for example, directly impact health resource allocation so
as to favor, or not disfavor, persons with disabilities. On the
contrary, the right to health resources is explicitly said to be a
right to “the same range, quality and standard of care as
provided to other persons”. As long as persons with disabilities
are treated equally with everyone else in a rationing
scheme—subject to the same strategy of CEA or egalitarian
principle and augmented with the same measure of benefit—then,
arguably, no human right has been violated. In the context of
international human rights, in short, equality of worth, dignity and
respect demands, not special treatment or even equal treatment, but
treatment as an equal. It would be as unfair, from this perspective,
to say that the disability is determinative of health resource
allocation as it would to say that disability is irrelevant. The
dilemma, in short, remains.

4. A persistent dilemma?

Currently, the dilemma posed by whether, and how, disability should be
taken into account for health allocation remains unsolved, although it
frequently appears in the distributive justice literature as a test
case for some variant of egalitarianism or a refined version of CEA.
Even if the dilemma is resolved, additional problems arise. If we
decide that disability is always a relevant allocation consideration,
then on the way to tackling the larger question of what the impact of
disability should be the question of comparability of varieties of
disability looms larger. It has recently been suggested that the
so-called “indexing problem” created by the
incommensurable components of human disadvantage (Woff and De-Shalit
2007), which
prevents any meaningful comparison between people experiencing very
different forms of social disadvantage is compounded when trying to
compare people with different disabilities. Comparing lower body
paralysis with deafness is hard enough, but two people both of whom
are paraplegic may experience it in vastly different ways depending on
the availability of wheelchairs and accommodations such as accessible
public buildings (Riddle 2014). If we decide that disability should
never matter, then it is difficult to see why any consideration of
either cost or benefit, unrelated to disability, could also be
justified. If so, then the only survivable allocation procedure would
be random allocation, which is highly counter-intuitive as a solution
to head-to-head individual allocation decisions, let alone a general
allocation policy.

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